The best experts: the narratives of those who have a genetic condition

In recent years, there have been growing expectations about the future benefits deriving from the uptake of genetics knowledge in healthcare. At the same time, there have been increasing calls to make greater use of patient expertise in treatment. However, relatively little is known about the experiences, needs and expertise of those who currently have a genetic condition. Drawing on the findings from an Australian study involving 21 semi-structured interviews with members of support groups which represent those with various genetic conditions (cystic fibrosis, haemochromatosis, haemophilia, and thalassaemia) this article discusses how individuals learn about, live with and manage their condition, and assesses the extent to which their experiences differ from those with other chronic illness conditions. It argues that while the experiences of individuals who have a genetic condition would appear to be similar in many respects to those with other chronic illnesses, they tend to encounter particular challenges in managing their condition due to its inheritable nature.